Life...and Death

The Parent Project Muscular Dystrophy website describes duchenne like this:

"Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their twenties"

I try not to spend too much time thinking about the bad things that will be coming our way.  There is so much good to focus on right now.  But the truth is I have to be prepared..and I can't be prepared if I don't do my research and try to come to terms with the hand we've been dealt.

As a parent you never consider your child dying before you.  We are all supposed to live long happy lives right?  We grow older have children, they get older and we have grandchildren, and then some point after a long happy life we pass on and leave our children behind to continue the process.  But how do you cope when that isn't the way things go?  As a parent how can you continue on without your child??  I can't even imagine it. 

We don't have all the answers about Austin's diagnosis yet.  They say we will have to watch him over the next few years and see how it progresses.  He is getting to the age where things will start to go downhill.  That's scary!  9 years old is the typical age.  That's only 1 1/2 years from now. 

Aside from a short life I think about all the things he may have to miss out on.  Playing sports, falling in love, getting married, having children, going to college, driving a car.  I know these seem like trivial things but imagine a life without them...   

I just want to make sure that he always feels like he has lived the best life possible even if he has to miss out on certain things.  I don't want to regret anything. I want to live life to fullest while we are here on this earth.  I want to love with my whole heart and experience the world the way God intended.  I want to pass that on to Austin.  I want to experience new things with him and take adventures while we can. I want to make amazing memories that we can hold on to forever.